Friday, July 23, 2010

"CountLESS" Times

I was running my fingers through Yousuf’s, now thick light brown hair, while I stood in line to purchase tickets to the zoo. I recalled that exactly a year ago we were sitting in a hospital room, Yousuf bald playing with a fire truck with only one hand, acting completely paralyzed on the other side of his body due to the port-o-cath insertion just a few days prior. Here we were looking completely normal walking through the zoo. I didn’t mind the heat, the long walking, or the strong odors to my sensitive pregnant nose. I thoroughly enjoyed my trip to the zoo by seeing how happy it made my kids. We have been given a second chance to live these experiences in a more meaningful way. Dr. Margolin is pretty confident that Yousuf will be just fine, but despite that confidence we never really know for sure. Many people say that all these doctor’s visits, rounds of chemo, and low blood counts will soon just all be a memory. I don’t want it to be “just a memory”. I want something permanent to change in my heart and in my life forever, as well as others. The impact of Yousuf having cancer opened a door to a world of sick people and great people that I didn’t know much about. Sure, I don’t want my little boy to be among them forever but I always want to be with them now. I love them. Not just the sick but the great doctors, researchers, and healers among them. Its funny how there are still times I cry alone just by remembering that Yousuf has cancer. I get sad every time the new month starts and he has to take the steroids altering Yousuf’s appetite and temperament. I always envision Dr. Margolin swinging her revolving chair around, peaking over her glasses with a smile saying, “I think it’s worth it.” Then I always remember the alternative to not going through all of this chemo. Insha’Allah, Yousuf will not always have cancer but I’m always looking for ways to get involved in cancer related events. When you’re in the same “family” giving to them is as if you are giving to your own child or even yourself.

Yousuf’s counts kept getting low and they would keep stopping his medicine and restarting it. His ANC got so low to a .15. The doctor likes to see that number between a 1.0-1.5, which is, of course still very low, but where they want a cancer patient to be at. The doctor decided to cut all Yousuf’s medicine in half, all except for the once a week antibiotic (bactrum) he takes. His counts were STILL low. They did an enzyme test to see how well Yousuf metabolizes each of the medicines. Maybe the medicine stays in his system longer knocking his counts lower. The result was normal for the daily dose of mercaptoprine but was slightly slower with the once a week methotrexate…but he had not taken that medicine yet since it hadn’t been a week since his last check-up. So then why were his counts still low? Well, it was clear to the doctor that it was the bactrum (antibiotic) making his counts so low like this. We needed different alternatives now for this three-day-a-week dose. Our options were: a pill every day -but it lowers his hemoglobin count ( I would rather steer clear of anymore blood transfusions!), second, an infusion once a month that lasts 1-2 hours to transfuse, or third (my choice) an inhalant that lasts 30 minutes that can be done at the hospital while getting his routine blood count anyway. We will see how this route goes and how his counts look. My once a month trips the hospital are now up to twice a month but hopefully with a higher ANC count and stronger little boy! And to be honest it only gives me more opportunity to reach out and be with the other patients, alhamdulilah. I love them all.


  1. Sis.. sooo nice to see an update from you! i'm having a tough time with the steroids this month.. for some strange reason Hishaam seems extra irritable this month..!!
    i feel exactly like you.. Hishaam now has thick soft hair and looks entirely normal.. noone would guess.. Subhaan'Allah, feel so blessed, but like you, this experience i'm taking to be something to gain from.
    I sometimes think.. "was life REALLY normal a year ago? or is it actually normal NOW?!"..think experiences like this, as awful as they are, make you stronger and wiser.. i have to hold my breath when i think back to oct 16th.. day my son was diagnosed.. i stil struggle with the word CANCER.. i can see you are much much stronger than me in that aspect.. you are very very bracve sis.. xxx

  2. Assalamu Alaikum Dear Umm Yousuf,

    I just wanted to say Alhamdulillah we just returned from Umrah and your Yousuf was in my duas in a sujood - May Allah the all Mighty give him complete and quick recovery insha Allah. Allah is with the patient ...